Paper 6: EUROCAT member registries: Organization and activities

✍ Scribed by Ruth Greenlees; Amanda Neville; Marie–Claude Addor; Emmanuelle Amar; Larraitz Arriola; Marian Bakker; Ingeborg Barisic; Patricia A. Boyd; Elisa Calzolari; Berenice Doray; Elizabeth Draper; Stein Emil Vollset; Ester Garne; Miriam Gatt; Martin Haeusler; Karin Kallen; Babak Khoshnood; Anna Latos–Bielenska; Maria–Luisa Martinez–Frias; Anna Materna–Kiryluk; Carlos Matias Dias; Bob McDonnell; Carmel Mullaney; Vera Nelen; Mary O'Mahony; Anna Pierini; Annette Queisser–Luft; Hanitra Randrianaivo–Ranjatoélina; Judith Rankin; Anke Rissmann; Annukka Ritvanen; Joaquin Salvador; Antonin Sipek; David Tucker; Christine Verellen–Dumoulin; Diana Wellesley; Wladimir Wertelecki

• Book ID: 102757102
• Publisher: John Wiley and Sons
• Year: 2011
• Tongue: English
• Weight: 636 KB
• Volume: 91
• Category: Article
• ISSN: 1542-0752
• DOI: 10.1002/bdra.20775

✦ Synopsis

Abstract

BACKGROUND

EUROCAT is a network of population‐based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT.

METHODS

Each registry description provides information on the history and funding of the registry, population coverage including any changes in coverage over time, sources for ascertaining cases of congenital anomalies, and upper age limit for registering cases of congenital anomalies. It also details the legal requirements relating to termination of pregnancy for fetal anomalies, the definition of stillbirths and fetal deaths, and the prenatal screening policy within the registry. Information on availability of exposure information and denominators is provided. The registry description describes how each registry conforms to the laws and guidelines regarding ethics, consent, and confidentiality issues within their own jurisdiction. Finally, information on electronic and web‐based data capture, recent registry activities, and publications relating to congenital anomalies, along with the contact details of the registry leader, are provided.

CONCLUSIONS

The registry description gives a detailed account of the organizational and operational aspects of each registry and is an invaluable resource that aids interpretation and evaluation of registry prevalence data. Birth Defects Research (Part A) , 2011.© 2011 Wiley‐Liss, Inc.